Hi there: Hi I'm Steph, I'm stage 1 mf - MPN Voice

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Steph_1976 profile image
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Hi I'm Steph, I'm stage 1 mf

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Steph_1976 profile image
Steph_1976
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24 Replies
socrates_8 profile image
socrates_8

Hi Steph... :)

I am Steve from Sydney Australia. I am Post ET/ (pre-fibrotic) MF but I do not know as yet what that means exactly in relation to my having MF as opposed to my disorder heading that way etc...?

Your picture is upside down ... Was that a deliberate way of describing how you are feeling? :)

Just saying hi...

Best wishes

Steve (Sydney)

JediReject profile image
JediReject in reply to socrates_8

Should be right way up for you Steve ?? I guess you're in very early stage of MF as no fibrosis is a good sign. . With luck it will be a slow burner for you managed with drugs for many years before you need to consider any radical intervention. Who knows there may be a cure apart from Stem Cell Transplant by then. Good luck Chris UK

socrates_8 profile image
socrates_8 in reply to JediReject

Hey Chris... (aka Jedi Reject)

Yes, well ... I am in the antipodes after all ... Where...once upon a time they use to depict cartography with people and animals standing on their heads in the antipodes... Is this to which you are referring pray tell? :)

Apparently, my BMB identified a Grade 2 level of reticulin where 0 is the lowest scale and 3 the most affected. Accordingly, one specialist described my condition therefore as 'Pre-fibrotic' with some scarring of the bone indicative of MF etc.

I do hope your diagnosis is sound Dr Chris, 'Slow-burner' etc... :)

Cures would be nice too...

It became apparent to me today just how ignorant many GPs are of MPNs. My GP recently left the clinic I was attending and his replacement (a senior partner) states that MPNs are not cancers... All the literature I have thus far gathered from journals and scientific papers begs to differ...

I am also most grateful for this site and everyone here...

Thanks guys :)

Steve (Sydney)

ET/MF?

JediReject profile image
JediReject in reply to socrates_8

If only I could make such a connection Steve, I'm not that smart though now you mention it I realised i am familiar with the mapping. Made me chuckle ref Dr Chris as that's what my Hem calls me due to my level of research and subsequent in depth searching questioning I subject him to. . He's always up to my challenges. .

Yes there are many GPS and even some Haematologists who know little of MPNS , they are a specialism in their own right I guess. In 2008 the World Health Organisation re-classified them as cancers. I have a letter from my first Hem in 2007 which states ' Myelo proliferative disorders are clonal malignancies and not cancers in the classic sense' which was the view at the time, but rather down played them and didn't help me with my claim for state assistance as I had to give up my painting business.

Good to 'meet' you buddy, , if you need any support or have qs about your MF feel free to ask. . , someone will respond. . Cheers Chris

socrates_8 profile image
socrates_8 in reply to JediReject

Hey Chris... :)

I am having to resort to using someone else's laptop as mine is on the fritz etc... (I mention this as I may take a little longer to respond to posts until sorted etc).

The reference to the 'Antipodes' is about where Australia is located etc... The earliest explorers (particularly the French map-makers - Dieppe maps) where the ones where people and animals were turned upside down in their depictions etc...

In those days, it was thought by Europeans that everything in the southern hemisphere was a perfect reflection of the north etc... :)

Hence, the reference to the picture being upside down by Steph etc... Well, that was what I thought you may have been referring to...

Like you Chris, I love to do loads of research but I am definitely at the other end of the spectrum of my (Pre-fibrotic) MF by comparison to yourself. I have just read some more about you and the fact that you have already undergone a BMT. I am just a tad older than you (I think Chris) I am 57.

I was wondering if you had any problems with gaining weight when you first commenced with your Hydroxyurea etc?

As of last week, I have started Interferon injections x3 per week, and have now learned how to do this myself etc... Seems pointless to me to take up the resources of a medical clinic's nurse to perform this task on my behalf etc...

I quite possibly have the worst veins known to humanity. It takes forever for people to extract blood from me for tests, and as result, I am almost invariably a human 'black'n'blue' pincushion post extraction etc.

Therefore, I do hope that the machine you have to be hooked up to for your blood work never quite becomes a reality for me... somewheres down the road of my own journey etc... I think that they would have to locate a main artery for that treatment, in my case?

I also tried to gain access to the 'Ruxolitinib' but they say that I do not yet quite meet all the specified criteria. Hence, somewhat ironically, I must become sicker before I am an eligible patient wishing to become well and free of most of the side-effects etc...

An acquaintance here in Oz says he hardly has any fatigue or nausea since commencing 'Ruxo'.

Anyways... as you say... early days for me with my MF...

Yes, I have also seen that the WHO also now classify MPNs as cancers. They firstly suggest that in order to meet the definition, a cancer must be two things. The term cancer describes a group of diseases where there is an overgrowth of one type of cell in the body. For a cancer to become most dangerous, two things need to happen:

i) Firstly, the cells need to grow excessively.

ii) Secondly, the cells need to not function normally and may invade the adjacent (normal) cells.

iii) MPNs are cancers as the cells in the bone marrow are growing excessively. However, in general, the cells function normally like normal blood cells.

Damage to adjoining cells is usually due to the large number of cells produced in an MPN.

Which returns to my previous point...

Q. "How does one explain to a GP that MPNs are a cancer if they do not know?"

A. "Very carefully... with a good measure of diplomacy and tact, or find another GP quickly..." :)

Good to meet you too Chris...

Be in touch again soon.

Steve (Sydney)

Steph_1976 profile image
Steph_1976 in reply to socrates_8

Hi Steve no my picture wasn't deliberate maybe it's because the way I took it on the side?

It's hard to say on the disorder, I'm post et and stage 1 mf x

socrates_8 profile image
socrates_8 in reply to Steph_1976

It would appear, I hope, that like you I am also early stages...

Let's hope it stays that way... :)

Steve

MFBMT2011 profile image
MFBMT2011

Number of people here can help you with information some with slow developing MF, some on varying medication, some who have had stem cell transplants (like me). We can answer questions you may have. However it helps to have a little bit more information as it is tackled different ways in different countries, at different ages and sometimes in different parts of a country as specialists differ. So share and ask away and we will try and help.

Chris (Watford UK, 63 , five years post stem cell transplant for MF)

JediReject profile image
JediReject

Hi Steph, , great pic with your bessie mate there. . Too cute. Like our good friend MF BMT 2011 (Chris number 1) says MF can be a very slow burner not requiring any form of treatment for a long time. . Your Haematologist will be able to determine that. It's very unpredictable in that way but good thing is you're stage 1 and tried tested drugs are available to manage symptoms if and when you need them. Also new treatments are in development and hopefully they will find one to counter the MF itself in time. .

I endorse all Chris number 1 says. . Cheers Chris -No2

Steph_1976 profile image
Steph_1976 in reply to JediReject

I hope so too Chris, but not in our life time maybe the next generation hey x

jillydabrat profile image
jillydabrat

Hi luv, welcome to the forum. Love the upside down pic and love the doggie even more. I am doggie mad as well. Have a good look through the site and you will find many posts regarding MF which I am sure you will find helpful. Keep in touch and we would love to know more about you and your beautiful furry friend xx

Jill

Steph_1976 profile image
Steph_1976 in reply to jillydabrat

Hi Jill, the site was recommended through Facebook and thought I'd have a look as you never who's in the same shoes as you?!

His name is Bertie, he's 3 years old cross chihuahua jack Russell and I have another called princess and she's a chihuahua cross dash hound x

jillydabrat profile image
jillydabrat in reply to Steph_1976

as you can see on my picture I am the proud mummy to two westies called Bungle and Bonnie. They are my world and would never be without them. Glad you found the site and I hope you feel as much at home as I am, take care xx

Steph_1976 profile image
Steph_1976 in reply to jillydabrat

Their really cute, home is where I feel I am the safest and I can take on the world x

jillydabrat profile image
jillydabrat in reply to Steph_1976

your attitude is fab, keep it up and you will take on the world, including this pesky condition xx

Steph_1976 profile image
Steph_1976 in reply to jillydabrat

I try my very best Jill. I have two jobs and I'm very positive about the condition but together we can all fight xx

jeanr profile image
jeanr

Hi Steph---I like the picture with your friend. I don't have a furry friend (apart from my teddy bear) but I have been thinking quite a bit about getting a dog recently. This group is really good for information and friendly support. I'm in Canada and I have ET. Have you been diagnosed long, and are you on any medication? Jean

Steph_1976 profile image
Steph_1976 in reply to jeanr

Hi Jill I was diagnosed with et in 2005 and then with mf in 2008. I was hydroxycarbomide which didn't work for me, they put me on anagrelide but last year took me off to see how I coped with epo injections but now I'm on jakavi too now but it's only three weeks in xx

babbittybumble profile image
babbittybumble

Hello Steph yes, really like the picture .Our son was diagnosed just over nine years ago now with Primary Myelofibrosis . He is so lucky to have no real problems but hopefully when and if a problem arises ,as Chris has said , people are working really hard to find treatments/cures for all MPDs .

Mazcd profile image
MazcdPartnerMPNVoice

Hi Steph, welcome to our forum, as you can see you have many friends on here who are more than happy to answer your questions, give you help and support and just be here for you. Love the photo. Best wises, Maz

Steph_1976 profile image
Steph_1976 in reply to Mazcd

Hi maz, yes it's lovely to talk people in the same boat. Thanks x

socrates_8 profile image
socrates_8

Please accept my apologies Steph...

For having a side-bar with Chris. I am just learning about how to conduct a 'Private message' etc...

Best wishes.

Steve (Sydney)

Steph_1976 profile image
Steph_1976 in reply to socrates_8

Hey Steve, don't be silly it's fine x

socrates_8 profile image
socrates_8

Thanks Steph... :)

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